One single woman, one crazy city, and a chronic disease

87 posts categorized "Treatments and goodies"

October 25, 2009

Two months ago today, I moved into my new apartment in Baltimore! I can't believe it's already been two months. Granted, the first two and a half weeks I was in Egypt and Jordan, but still- that's a good chunk of time here in what's becoming my new home.

Things are going pretty well, I have to say. It's not New York, and there are tons of things I miss, namely my friends, but I love that New York is still close by. I've already been back one weekend and had a blast visiting allmyfavoriteplaces and catching up with friends. On the train back to Baltimore, though, I realized how tired I was from the weekend and felt content to be heading back to a less stressful version of my life in Charm City.

Not that I've exactly made things as easy for myself here as I could have. I LOVE my apartment, and there is not another place I'd want to live, but it is on the top floor of a four story walk up. That's 68 stairs to climb at least once each day- often more. I could have chosen a modern building that had an elevator, a trash chute, a dishwasher, etc., but I couldn't resist living in an old mansion from the 1840's with hardwood floors, high ceilings, and a terrace that overlooks the Washington Monument (Baltimore's, not DC's) and a beautiful park, not to mention that it is about three times the size of my old Manhattan studio).

I realize I'm taking a bit of a risk and banking that my meds will keep working (knock on wood). But I figure, what is the point of feeling better, for the most part, if I'm still going to live as if I was sick? For better or for worse, it's not my style.

My job is going really well, and I have to admit, I don't miss working in crisis-mode at all. In my old position, I was constantly putting out fires and my time was not my own. It's a strange but wonderful feeling to be engaged in what I'm doing but not swallowed up in it. All of my evenings and weekends are mine to do as I please. For the moment, I am reveling in all my free time by immersing myself in another new perk: cable.

Yesterday, I went to my first yoga class at a new studio- Charm City Yoga. The teacher was great, and though the class was pretty difficult, I felt up to the challenge and even better when I left. The studio reminded me a little of where I practiced in London, which made me feel happily nostalgic. I'm looking forward to going back soon.

Driving is still a little bit of a learning curve. I don't mind driving itself, except for when I don't know where I'm going (which is, um, most of the time), and the parking situation is a bit stressful. I am lucky to have a parking space with my building so I don't have to scavenge for one on the street, but in order to get to the space, I have to open the gates from hell. Even if I didn't have RA, these would be difficult for me to open and close- I practically have to use all of my body weight to get them moving. With the RA, it's definitely not a pleasant experience for my fingers, elbows or shoulders, and again, if my RA acts up or takes a turn for the worse, I have a feeling I'll have to forego the space. Thankfully though, I don't have to drive every day since I'm in walking distance of work and tons of cute little restaurants.

Speaking of which, there is good food to be had here. Obviously it's not the same culinary scene as New York, but I'm not in danger of going hungry. In fact, I just ate a scrumptious meal last night at the B & O American Brasserie that included one of the best desserts I've ever had (pumpkin bread pudding = hello, lover.)

I have begun the ordeal of finding a new medical team. Luckily, one of my new friends here has hooked me up with her rheumatologist, so the wheels are in motion, and I have an appointment in a few weeks. I'm betting I'll have to go through the pre-authorization process with my new insurance for Enbrel, joy of joys, but luckily, I have a few extra shots tucked away in my fridge since I skipped taking them while I was in the Middle East. I'm feeling well overall, though I have definitely been very tired all
around. Having every part of my life be brand new is exhausting in a
way. My trip also left me with a big energy deficit that I am still
trying to overcome.

Over the next few months, I'm looking forward to exploring Baltimore and starting to carve out a little niche for myself here bit by bit. I might even start (gulp) trying to date again. We'll see.

October 18, 2009

As many of you know, I love to travel. I also love to eat. When I can combine the two, I'm a happy camper, but sadly, I can't always be running off to some exotic location just for the sake of dinner. The next best option is going to grab dinner around the corner but feeling like you are traveling because the food is so good that it transports you. THAT is what happened to me the first time I ate at Boqueria, a Spanish restaurant/tapas bar on 19th St. in Manhattan that was just down the street from where I used to work. It also happened to me when I ate there the second time, the third time, the fourth time...ok, you get the point. Boqueria quickly became my favorite restaurant in Manhattan, one that I found nearly every excuse in the book to frequent. I loved this restaurant so much that it is where I decided to have my going away dinner, donned in my finest heels, on my very last night in Manhattan before moving down to Baltimore.

What makesthis restaurant even more extraordinary is that the chef, Seamus Mullen, and I share somethingin commonbesides an appreciation of delectable Spanish cuisine: rheumatoid arthritis. That's right, folks- one of New York's best chefs is laced with the same inconvenient disease as the rest of us.

I first discovered this when I was being filmed for WebMD's RA TV series, My Life with RA. The production crew I spent two days with had just finished filming the Cooking with RA series for RA TV featuring none other than Chef Seamus Mullen, and imagine my surprise when I found out the chef they kept talking about was the chef of Boqueria!

Clearly, this is a chef who doesn't let his RA come between him and his chorizo. Now, we allget the chance to root for one of our own because for the past few weeks, Chef Mullen has been duking it out on the Food Network's The Next Iron Chef America. He's kicking some pretty good butt so far, and I for one believe he can take it all the way to the finish. Having feasted on his food at Boqueria, there is no doubt he's got the culinary talent and the chops; knowing what he's had to overcome to get this far makes his success even sweeter.

The fact that he has RA hasn't been mentioned on the show, at least not yet. One could argue that this is a wasted opportunity given RA's sad, sad public profile, but I also think it's important that he isn't being singled out because of RA. This show is about the cooking and the competition, not the chronic disease.

You can tune in to cheer for Chef Mullen Sunday nights at 9pm EST on the Food Network. You can also find his Cooking with RA series and find out more about his struggle with RA on Web MD's RA TV.

October 07, 2009

In honor of my birthday and the 2nd anniversary of my diagnosis (both today), I am happy to be hosting this edition of Patients for a Moment, the blog carnival by, for, and about patients.

In addition to being my birthday and anniversary month, October is Breast Cancer Awareness month (CHECK YOUR BREASTS!) Kairol Rosenthal at Everything Changes poses some challenging, smart questions about one of the latest awareness campaigns in her post, Using Sex to Sell Breast Cancer.

Inspired by a quote from a former graduate professor, Laurie Edwards at A Chronic Dose explores how we get through the things we have to do when we have no other choice in Just Make it Work.

Along those lines, Lauren at Novel Patient describes her frustration, fatigue and fears about having to do it all when it comes to managing her illnesses in My Own Advocate.

And then what happens when you hit bottom and keep going? Leslie bravely confronts the decisions she must face as a result of starting Below Zero due to Lupus and Rheumatoid Arthritis at Getting Closer to Myself.

Thanks to all who contributed- it was so great being introduced to some of you while getting to know others of you better through your posts! The next edition of Patients for a Moment will be back home at DuncanCross.net, and the submission deadline is October 16th.

October 04, 2009

After months of waiting and wondering, WebMD has finally posted all four of the My Life With RA segments featuring yours truly. Though all of it was filmed over the span of about 24 hours, it was divided up into four segments titled Single Gal With RA, Navigating the Dating Scene with RA, City Living with RA, and the rather dramatic sounding finale, My Invisible Pain.

I have to admit that it is a little weird watching myself. I am not above feeling self conscious and nit picky about my appearance, even when it's for a good cause. If only the series could have been filmed, oh say,after I had started Weight Watchers. I'm a good ten pounds lighter now than I was then, and silly or not, I cringed a few times, particularly at some of the clips that caught me at rather unflattering angles. (See for example, the clip of me opening a wine bottle, where it looks like my second chin is going to explode and take over my entire face, or possibly the world, at any moment. And just in case seeing me from that angle once wasn't enough, they replay that clip in slow motion just to make sure everyone gets a good glimpse of the bulbous mass beneath my chin. ick.)

But, all vanity aside, I feel pretty good about how they turned out. It's a little bit funny that I no longer live in New York; I felt a twinge of nostalgia at seeing the city and particularly my old apartment captured on film. A lot of stuff went down in that place. Watching myself describe what things were like at their worst brought up a lot of different emotions and memories, but it also made me realize how much better I am now. I am coming up on the two year anniversary of my diagnosis, and it has been a crazy journey over these past two years. Who could have known how so many things would change in a relatively short amount of time, all things considered?

Thanks to everyone has written in with your comments about the series. It's pretty cool, and I'm glad that I got to participate in it. I'll definitely be tuning in to RA TV to see what else they have in store.

September 30, 2009

The next segment of My Life With RA featuring yours truly should, and I do emphasize should, go up tomorrow on WebMD's RA TV. I'm not sure why the 2nd installment was skipped a few weeks ago or if they have plans to show it later since they haven't updated their schedule, so your guess is as good as mine.

Check it out, rate it, share it and help get the word out about RA! (And fingers crossed that it comes out OK. This is the one on dating, and I'm a little nervous. . .)

September 24, 2009

I just transferred all my prescriptions, including Enbrel, to a CVS down here in Baltimore. I went to pick them up after work today, and after getting confirmation that they were ready, I didn't pay much attention as the pharmacist got the Enbrel boxes out of the fridge. I paid for the drugs, and then grabbed the bag she had put the Enbrel in, which seemed rather gigantic and filled to the brim. Given that I'd thrown my other two smaller prescriptions in my purse, I peered into the bag curiously only to find a massive stash of eight Enbrel boxes, each with four syringes, staring back at me.

Oh, the torture. I was so tempted to just take off. I mean, that's like handing a junkie real heroin instead of methadone, or a reformed bank robber a bag of unmarked cash. And given that my insurance is about to switch and I'll have to go through the entire pre-authorization process again AFTER finding a new rheumy, it was particularly heartwrenching to turn back around and tell the pharmacist there was some kind of mistake.

She didn't even believe me at first, thinking that it was my error, and she actually said there was only one syringe per box. Luckily, before my greed could get the better of me, she figured out that wasn't the case and took the extra SIX boxes back.

Sigh. It would have been like Christmas coming early. Or winning some kind of chronic illness jackpot.

September 23, 2009

In honor of my upcoming 31st birthday and the 2nd anniversary of my diagnosis (not that I really want to honor that, per se) on October 7th, I'll be hosting the 9th edition of the patient-centered med-blog carnival Patients for a Moment!

If you are interested in submitting a post, please get your submissions to me by 9pm on October 4th. Submissions can be emailed to me at singlegalra@gmail.com. Please put PFAM in the subject line!

Your post can be on any topic, issue, disease, whatever - so long as
it is likely to appeal even to patients who don’t share your specific
circumstances. You can be a patient, doc, nurse, caregiver - whatever.

September 16, 2009

I'm back! I am completely jet-lagged, as evidenced by the fact that I am writing this post at 6.30am, which is not a time I am ordinarily up, let alone putting sentences together. The trip was, in a word, amazing. It was intense, beautiful, awesome, serene and frenetic depending on the day and the place. Thanks to all of you who offered encouraging comments on my Facebook page along the way!

Over the next few weeks I'll write up a detailed account of my (second) trip of a lifetime, but overall, I did really well! I definitely had moments where a hip, a wrist, a knee, a foot or all of the above were feeling unhappy and appalled by what I was asking them to do, but for the most part, the pain didn't last too long and didn't prohibit me from doing anything I wanted to do, and I didn't have to take my fallback prednisone! The relaxing lie-on-the-beach portions of the trip were well placed to offer recovery time from what was literally the hike from hell (climbing Mt. Sinai in the dark at midnight beat the pants off what I did in Peru) and scrambling around arches and big rocks in Wadi Rum and Petra. All I can say is, thank god for the Dead Sea Spa!

While I was away, the first of four segments I shot for WebMD's RA TV went up! I watched it from a small internet cafe in Luxor, Egypt that didn't have any sound, so I was quite relieved to finally watch it with sound yesterday; I feel pretty good about how it turned out, and excited for the next one that will air tomorrow! You can check them out here, under the My Life with RA series. Please help me spread the word about the segments by sharing this link on Facebook, Twitter, or plain old word of mouth.

OK. I'm off to figure out what living in this new city is all about! Next big task: dealing with switching my car over to Maryland. eek.

August 09, 2009

This past Thursday night, three Sick Chicks got together at Nooch in Chelsea for some cocktails, mocktails and thai treats (sadly, one of our crew wasn't able to make it, but she was there in spirit!). For me, it was bittersweet as it was my last Sick Chick NYC gathering, and I will really miss seeing the awesome and inspiring women I have recently met through it, but know that'll we'll stay in touch- thank god for the internet, right?

And, if you are in the Baltimore area, let me know as we already have a small contingent in the works, and once I'm firmly settled in, I will be arranging a Sick Chick Baltimore Happy Hour to keep the movement going.

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Say 'RA'

Check out Sick Chick Jodi Mckee's new portrait project! Jodi is a fantastic photographer and is using her creative talents to fight back against the invisible nature of autoimmune disorders by taking portraits of those of us with these often hidden diseases. She writes, 'I want to give a face to these diseases to inform my friends and family
at least, and the world at best, that we really aren't "too young to
have that" and that even though we "don't look sick," we are. And we
need your care and support.'

I was lucky enough to be the kick-off portrait for her project (and damn, did she make me look good!), and she is looking for others who would like to volunteer to become a part of it. To learn more and volunteer, check out Jodi's project on here and help spread the word about her endeavor! The more buzz, the better.

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My Life in Numbers

Days left at my old job: 4.5 Days left as a New Yorker: 11 Days left till I am an official resident of Baltimore: 14Days left till I depart for Egypt and Jordan: 20Days left till I begin my new job: 43Days left till I resume normal blogging activity: 45 (estimated)

Bear with me through the move and my trip! With everything going on, I'm not able to devote the time or brain space to blogging, but I will be much better once I am finally settled in at the end of September. I will try to post as much as possible, even while I'm in the Middle East, so please keep checking in here or, better yet, on my facebook page for updates.

July 22, 2009

One of the topics many of you have written to me about is weight loss. Like me, you not only got RA, but you also got the RA Freshman 15. Nearly two years after my diagnosis, I have FINALLY managed to take mine off! Read about it here and see the comic strip by Jane Samborski.

Have you gained weight post RA? Have you tried to take it off? Write below to share your experience: